Jasper, a happy and playful 4-year old, was diagnosed with fragile X syndrome when he was a year old. A genetic condition, fragile X syndrome causes intellectual disability, behavioral and learning challenges and various physical characteristics. He has also since been diagnosed with autism.
Currently a preschooler, Jasper loves trucks, trains and construction vehicles. In addition to swimming and riding his bike, he also likes to read books and play with his trains. A citizen of the US and Germany, his ultimate career goal is to be a firefighter when he grows up.
During a routine ultrasound 16 weeks into Ashley’s pregnancy, the sonogram image indicated that part of baby Audrina’s heart was forming outside of her chest. Only eight in every million babies are born with ectopia cordis, a rare congenital malformation where the heart is abnormally located either partially or totally outside the chest; 90 percent of children with this condition are either stillborn or die within the first three days of life. An extremely risky surgery was Audrina’s only chance for life.
Today Jack is a happy, healthy 2-year-old who hasn’t let a tough start to life prevent him from being a cheerful toddler. Shortly after Jack’s birth, he experienced symptoms of neonatal abstinence syndrome (NAS) and spent 22 days in the hospital weaning from the opiates and other substances he was exposed to by his birth mother’s drug use during pregnancy. He then benefitted from the Fostering Connections program, a specialized foster care clinic providing a medical home at The Center for Family Safety and Healing at Nationwide Children’s Hospital.
Born a healthy baby, Alyssa was reaching most of her developmental milestones until, at 20 months, her lack of speech development and low muscle tone prompted a visit to Children’s Specialized Hospital for an evaluation. Thanks to that visit, Alyssa began receiving physical and speech therapy for muscle strengthening and to address her language delay and apraxia, a motor disorder caused by damage to the brain.
Kai is a vibrant 16-year old who loves writing, drawing, listening to music and painting nails. Though today, you'll only notice her speech delay, as a little girl she overcame many scary battles. Kai was rushed to UH Rainbow Babies & Children’s Hospital immediately after birth to be treated for holes in her heart that were identified during her mother's pregnancy. At 6 months old, she had open heart surgery to correct her heart defect. Thankfully, she has not had any heart troubles since.
Chase was born at only 27 weeks gestation. He was diagnosed at birth with cerebral palsy, a stage 4 brain bleed, chronic lung disease and asthma due to his prematurity. At just 3 years old, he is currently receiving physical, occupational and speech therapy. Chase sees a lung specialist for asthma, and has had eye surgery from an issue caused by a seizure. Regular visits to a neurologist help make sure he is hitting his milestones as well as providing a regular opportunity to monitor the brain bleed.
Thanks to a prenatal diagnosis, Everett’s parents knew he would be born with spina bifida, a birth defect that impacts how the spine is formed in utero. His brain was also affected so he has a tube to drain excess fluid from his head. Despite over 20 surgeries to straighten and strengthen his feet and legs and to allow him to be continent, Everett still loves the hospital because he knows he has a “fan club” of providers supporting him to be healthy and active.
Kelsey is an 18 year-old recent high school graduate and a patient at Dayton Children’s Hospital. For years, she has been teaching the hospital’s medical students how to best treat their patients
To continue raising awareness about pediatric organ donation, today’s testimonial comes from 16-year old Brendan, who is a heart transplant recipient.
It’s not what I am inside but what I do that defines me.
Who is Batman? Batman is an intelligent, strong character who can think on his feet. He fights against evil and lives by a strict moral code. I believe in the strength and courage that superheroes embody. But what defines me? I am Brendan. I just turned 16 and celebrated the 10th anniversary of my heart transplant. I am so grateful to the family who gave me a chance to live. I have strawberry blonde hair, pale skin, and I walk into rooms with a smile on my face. I love to tell jokes and make people laugh. I do the best I can. I enjoy my friends, love playing sports, but sometimes I get headaches.
Photos l-r: hours post heart transplant, 2005; infant, 1999; today, 2015
The second in this year’s three-part briefing series conducted in cooperation with the Congressional Children’s Health Care Caucus focusing on pediatric health care coverage will be happening this Friday.